The story so far.
Allow us to introduce you to two very beautiful and very special boys Sam (Left) and Alex (Right).
The beautiful bit is obvious, just look at the picture above. The special? Here’s why!
To look at this picture you see two happy, smiley little boys but beneath the exterior there is something happening to them that is not only rare, but also incurable.
Imagine the joy of Sarah Wilson (Mother) and Ian Bolton (Father) in December 2004 when they were told at a 10 week scan that they were expecting twins. At 20 weeks they discovered that they were identical boys and they were finally born 7 weeks early in May 2005. Although they were fit and healthy they spent 3 weeks in the Special Care Baby Unit at Derby City General Hospital.
The early part of their lives allowed them to grow and be as active as any normal child might. They could role, bear weight on their arm and lift their heads to a comfortable position to allow them to be inquisitive like all babies. Then came the blow.
Imagine the devastation when in November 2006 Sam and Alex were diagnosed with a condition known as SMA (Spinal Muscular Atrophy) something which at the time their parents had never heard of. SMA is a nerve wasting disease that comes in several stages and Sam and Alex have Type 2.
When Sarah and Ian were told exactly what this disease was and how it would affect the rest of their lives, their whole world fell apart in an instant. They were told in one afternoon that their only children will never be able to stand, walk, or even sit up by themselves. They will have movement of their limbs for a short period of time but this will eventually wear away. Their condition will continue to deteriorate and this will eventually lead to the worst case scenario - they may not live past childhood. At some point, the deterioration of the condition will reach a plateau and this will give their consultant a better idea of the severity of the disease, however there is no way of knowing when this will be – it could be next week, next month or next year ……
Since the diagnosis there have been slight changes to their physical ability – Sam can no longer roll over and both boys need more support with sitting. However, they have continued to develop mentally and their speech continues to develop as with normal 2 year old children. They enjoy singing and being read to, playing with their toys – particular Thomas the Tank Engine – and love watching Teletubbies on TV. To prevent them from being in one seating position all the time, they have some time lying on the floor with soft toys or laughing at the family cat, sitting in their highchairs to eat meals and using their powered chair to get themselves around although this is still a new experience for them and the furniture!!!
At the moment the family’s lives are taken up with appointments and at the moment they see a physiotherapist, an occupational therapist, a portage worker, specialist health visitor, a consultant, an educational support worker and an educational psychologist. As well as a Health Worker they also have a team of specialist nurses available should Sam and Alex fall ill.
Currently, the boys have special seating at home and at nursery, a joystick operated powered chair, special bath seats and in the near future will probably need a more suitable pushchair and a huge range of specialist equipment.
As they continue to grow and gradually become heavier this is affecting their ability to be active which is frustrating for 2 children who at this stage of their lives should be toddling round the garden and running off in supermarkets.
There will be frequent updates regarding Sam and Alex’s progress on their own web site at www.twinswithsma.co.uk. Why not pay them a visit now?
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